Updates on AVERY. (good news update pg 33 post 489!)

[antmaril]

Great news

Best wishes to all of you.

 

[TruBlu]

My DS (Cameron) was asking about Avery last night. How is he doing? He's been on my mind a lot as we are preparing for Cam to go to Kindergarten in a few weeks. Hope all is well!

 

[NHAnn]

Avery is doing great these days! We are so blessed. We spent some time with them Sunday afternoon. He goes to the hospital on a day trip monthly now for chemo thru his port and has oral meds daily at home. But the dosages and side effects are much less intense than the prior phase. He will have spinal taps w/chemo every three months. This "maintenance" phase will take 2 + years. He is fnished with PT and OT. It is such a joy to see him running and playing with his listtle sisters. His hair is growing back. He's a remarkable little boy, the whole family is remarkable truly. He just recently started back to "school" (a MOntessori pre-school) a couple of mornings a week. A bit of an adjustment as he has not been since last Thanksgiving, but it's going well. They have decided to keep him there for kindergarten in September, rather than go to the public kindergarten. The scheduling logistics work better for their needs (public K is 5 days a week for 1/2 day, at his school it is 2 or 3 full days. I will try to get some pics posted here for you all soon!

 

[Mickeyfaniam]

Truely wonderful news Ann!

 

[TruBlu]

Truly an answered prayer. We are so happy for you all!

 

[NHAnn]

AVery's white blood counts have dropped too low the last couple of weeks (after being "too high" for a couple of weeks). So although he still feels great and is in wonderful spirits, he is at risk for infection so on "house arrest"...no school or public places...they suspended all the chemo meds for the time being. DIL is "bleaching and Purell-ing" everything in sight!

We are hoping and praying the counts will recover in time to go forward with his big plans for a 6th birthday party at the end of the month!!

 

[KPeveler]

hugs and prayers coming your way - hope everything is okay!

 

[NHAnn]

Counts were back on the low end of optimal range today, that's a good sign. Today was at 570 on the Absolute Neutrofil Count, optimal is 500-1500. Last draw he was 34 So he was able to resume his chemo today.

 

[Mackey Mouse]

Oh Ann.......he is doing a great job battling.. hugs and he is in my prayers..

 

[FSUDisneyGirl]

I just read this entire thread...all tonight!

Just wanted to say I am so happy that he is doing so much better than last year! Avery and his family are in my prayers as well!

 

[NHAnn]

aw, thank you Erin!
Avery celebrated his 6th birthday last week!!
There were some dark days last winter when we feared there would not be another birthday. But hope and strength prevailed. He's doing really well though treatment will continue another couple of years.

 

[NHAnn]

TruBlu...saw your post on Avery's Caringbridge site Thanks for your support!!

Avery's blood counts were just right on this week!! Not too high and not too low!!


Happy Halloween to all!

 

[TruBlu]

TruBlu...saw your post on Avery's Caringbridge site Thanks for your support!!

Avery's blood counts were just right on this week!! Not too high and not too low!!


Happy Halloween to all!

Since my entire family has been stalking the little guy for a year now, I thought I'd post something. He really is looking great! What an amazing little man!

 

[NHAnn]

Hopefully just a bump in the road...Avery's spinal tap this week (he has them every 3 months) showed a couple of cells that shouldn't be there. Not nearly enough to indicate relapse, and they say it could be "nothing"-- like a funky sample or something. They will draw again in one month. We will stay busy, enjoy the holidays and not "bleed before we're shot" but cranking up the prayers that it is "nothing"...

 

[JunieJay]

I absolutely will keep Avery in my prayers, Ann. I'm sure its nothing, just a fluke.

 

[NHAnn]

ALL CLEAR on Avery's spinal tap today!! SO we stay on track with his current treatment, no relapse, we are so happy and grateful!!

 

[mommasita]

ALL CLEAR on Avery's spinal tap today!! SO we stay on track with his current treatment, no relapse, we are so happy and grateful!!

Thank God

 

[KPeveler]

WONDERFUL!!!!!!!

Hugs and prayers all around!!!!

 

[NHAnn]

It has been many months since I updated here...I apologize....lots going on in life....

but am happy to report with Avery the news continues to be generally very positive. He turned 7 yesterday, and at Thanksgiving we'll be at the 2 year mark since diagnosis. If all goes well he has 16 months left of treatment.
He continues on oral meds daily, inlcuding a monthly dose of steroids that make him (as his mom says) "a little boy with PMS" -mood swings, food cravings etc for a few days. He has bi-weekly blood draws and bi-monthly spinal taps. His blood counts fluctuate, they tinker with dosages, it fluctuates some more. A roller coaster still-- but the hills are shorter, the drops less steep, and the curves are not as sharp as the first year.
He started first grade a month ago, and is playing soccer.

He's also turning into quite the dynamic little public speaker, has talked to large groups at fundraisers for CHaD (Children's Hospital at Dartmouth) and cancer awareness type events. This is very interesting, as before his illness he was very reserved.

He had a Make A Wish trip to Orlando in June, we were able to join them for a few days of it....an amazing time....
the best for me was at Star Wars weekend at HS, he was chosen for the Jedi training ...it was very moving and symbolic for me to see him on the stage battling Darth Vader

Thank you all for your continued prayers and support!!

 

[TruBlu]

FANTASTIC update, Ann.

We were at Disney this past June, too. Too bad Cameron and Avery didn't run into each other. Cam would have loved to have met his hero in person.